Thousands of schools transitioned to online learning in 2020 due to the COVID-19 pandemic, during which time many children with cancer faced significant challenges with their schooling. An opinion paper by Johns Hopkins experts, published by Thornton et al in JAMA Pediatrics, highlights some of the issues faced by families and offers suggestions for moving forward.
Children undergoing cancer treatment may have symptoms such as fatigue, pain, motor impairments, or vision/hearing loss that make learning more challenging, explained coauthor Kathy Ruble, PhD, MSN, RN, CRNP, Director of the Pediatric Oncology Survivorship Clinic at the Johns Hopkins Kimmel Cancer Center and Associate Professor at the Johns Hopkins University School of Medicine and School of Nursing. Additionally, therapy frequently induces deficits in attention, executive function, processing speed, behavior regulation, and overall IQ.
Although clinicians in pediatric oncology or other subspecialties are the ones who spend the most time with families, they’re often the least well equipped to handle these types of issues, Dr. Ruble said.
“If somebody is having difficulty walking, we don’t have any problem sending them to physical therapy,” she says. “But if someone can’t hold their pen, or employ fine motor skills to use the computer, we’re much less likely to pick that up in a clinical visit and send them to occupational therapy. There are many departments within the health-care system that can help with disease-acquired or treatment-acquired disabilities that I think we underutilize because we don’t think about it enough.”
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Issues Reported
The authors explain in their report that prior to COVID-19–related school closures and the shift to online learning, many children with cancer received homebound school services (either in a face-to-face or hybrid format). However, during the pandemic, many of these homebound services ceased; the authors noted that children newly diagnosed with cancer encountered issues in enrolling in homebound services and were not able to attend full-day online class or attend online class whatsoever, and children who had previously been receiving these special services “lost support in the online transition because of slow or absent service redesign.”
Only about 35% of children with cancer who had received special education services prior to the pandemic continued to receive these after the shift to online schooling. Nearly 60% of parents reported that their children with cancer had more difficulty learning in an online schooling setup. Additionally, many parents described difficulty securing special education services for their children even prepandemic.
The authors also noted that most pediatric oncologists—93%—acknowledged that “they are responsible for addressing neurocognitive and school-related issues due to disease and/or cancer therapy.” However, 54% of pediatric oncologists reported that they received no training in these topics, 66% reported that they only “somewhat” understand school-related issues patients and their families face, and 28% report that they have confidence in their knowledge of these topics.
In light of these statistics, patients and family caregivers should bring up concerns to every clinician they encounter and ask for assistance, Dr. Ruble advises. Meanwhile, she said, during examinations, clinicians should ask about school performance; look for signs and symptoms that might make learning challenging; and learn what resources are available within their institutions or communities. Pediatric neuropsychology teams, social workers, and disease-specific organizations may also be helpful.
The report authors wrote, “Through early recognition, prompt intervention, and leveraging interdisciplinary teams, pediatric clinicians can help ensure that children with chronic illnesses maintain age-appropriate learning alongside their peers as virtual education grows in popularity. Consequences of inaction on this front will lead to lifelong health impacts on top of existing chronic medical needs.”
Dr. Ruble and her team have also developed a continuing medical education course to help oncology health-care providers navigate the challenges associated with the neurocognitive impacts of therapy. It is available as a Massive Open Online Course (MOOC), free online courses open to anyone, on the Coursera platform Kids With Cancer Still Need School: The Providers Role.
Disclosure: For full disclosures of the study authors, visit jamanetwork.com.
